I’m really scared. Scared for the future. I’m going against all my rules feeling like this. I tend to prefer to not dwell on what might happen with the progression of my MS. Because that’s just it. It only ‘might’ happen. There’s just as much a chance that everything will be ok. Which is why I see little point in wasting time worrying about it. That isn’t effective 100% of the time though. Like now for instance.
I’m not really sure what’s triggered it. I returned to work last Monday after six weeks off following my second round of Lemtrada and it was ok. As I’m on a phased return, I worked four hour days last week, today I managed five hours and tomorrow I’m going to try for six. And for the most part, since about two weeks ago I’ve been feeling considerably better than I usually do.
This weather is not helping at all though. Yesterday, I felt terrible. And all I could think about was the fact that I really needed to clean my bath. But I just didn’t have the energy. I could barely stand up for 20 seconds without feeling like I needed to sit down again. And still….”the bath needs cleaning Jo,” said that little voice in my head. All I could think about was that just for once, I’d like my whole bathroom to be clean at the same time. Not just the toilet, or not just the sink, or not just the bath.
But I left it. I just couldn’t do it.
Today. I’ve been into work and had a good day. And although I’ve had a bit of an upset tummy since I got home (this happened last year – damn immune system. It literally reacts to the slightest thing) I’ve been full of energy. To the point that I’ve done a load of washing, changed my sheets, vacuumed and guess what? Cleaned the bathroom! THE WHOLE BATHROOM! I’m sat in my bed now in an attempt to recover from that mass expenditure of energy, but I felt good whilst I was doing it, so I don’t really regret it!
Dave and I are in the process of buying our first home at the moment and it’s really stressful waiting for a completion date. But we’re having ALL the grown-up conversations in the meantime. The current debate is over having, or not having a cleaner. Because I can’t even begin to explain how knackering cleaning that damn bathroom is. And I can’t just wait for a random day where I have energy like I do today. It could be months before this happens again! And actually, even if I do have the energy levels for it, I’d rather use it on going out for a nice walk or on some other quality time with Dave and Poppy.
It’s conversations like this that are making me fear for the future. I don’t know if it’s the very real responsibility of having a mortgage and desperately trying to find an insurer that will give me a half decent quote on life insurance (*NEWSFLASH*: getting a decent quote with MS – not easy. And don’t even bother with critical illness when you’re already considered critically ill). It could equally be that I read a story about a 46 year old woman who is living in a care home with residents that are mostly in their 80’s and living with dementia*. The system has totally failed her. It’s heartbreaking. She didn’t inflict MS on herself. She didn’t chose to have it. I know that life isn’t fair, but nobody deserves to live how she is living. And it just seems to have hit me that that might become my reality and it scares the living daylights out of me.
I know that right now I’m in a little funk that’s completely normal when you have a degenerative condition such as MS. In a matter of time, whether it’s days or weeks, I’ll snap out of it and start living in the present again. But sometimes I just need to let this emotion come out, rather than bury my head in the sand. The trick is remembering to stand back up and march on.
I’m ok. I really am. On a rational level I know that this is just something I need to go through, but I also know that there’s light on the other side and it’ll be ok.
*I didn’t go looking for this story. I tend to avoid it because I know that half the time the media only tells half a story anyway and is meant to sensationalise and make us all worry and fear everything. This was posted in an MS Facebook group though and I guess curiosity got the better of me.